This week is World Continence Week, an annual event designed to raise awareness of bladder weakness and pelvic health. These are very common problems – bladder weakness alone affects 1 in 3 people – but there still remains a stigma which needs to be tackled. Due to chronic coughing, many aspergillosis patients will face stress incontinence (loss of urine due to pressure put on the bladder), which can impact on airway clearance techniques and life in general. Unfortunately, incontinence is seen as part and parcel of ageing (or illness, pregnancy etc.), so many don’t access the help they need. However, incontinence can be helped, and in many cases cured, with exercises, surgery or medication. World Continence Week aims to educate people on how common pelvic health issues are, reduce the stigma surrounding them and link people with the help they may need.
This week is the British Lung Foundation’s Love Your Lungs Week, a chance to raise awareness about breathlessness and lung disease. As many aspergillosis sufferers will know, lung disease can be difficult to diagnose and can have a significant impact on quality of life. The BLF are raising awareness of their online breath test – a quick and easy way to check whether or not your level of breathlessness is something you should be concerned about. Often people put off mentioning breathlessness to their doctors because they’re not sure it’s something they should be worried about, or they’re worried that their doctors will be disapproving about their lifestyle or smoking habit. However, breathlessness is a serious symptom and can be indicative of severe lung conditions, such as lung cancer, COPD and rarer diseases like aspergillosis. Breathlessness needs to be checked out so that people can access the treatment they need to prevent their quality of life diminishing. Even if breathlessness isn’t due to a health condition, your GP can help you with advice on improving fitness levels and stopping smoking.
You can help by raising awareness about the significance of breathlessness and lung health online and in your communities. Lung disease affects 1 in 5 people, which means you may know several people whose lives could be changed by taking the BLF breathlessness test.
The 10th-16th June is national carers week in the UK, and this year’s theme is “help build carer friendly communities”. Though most people wouldn’t identify themselves as a carer (instead just calling themselves a partner/parent/child/friend etc.), there are millions of people around the UK providing unpaid care and support to a family member or friend. Caring for someone can be hugely rewarding, but can also impact on many aspects of life – carers need the help and support available to be able to look after their own wellbeing too.
Isolation and loneliness are major problems faced by carers; time and financial pressures can prevent them from reaching out to friends and family and participating in activities for their own interest. Also, despite contributing massively to society, carers are far less likely than the rest of the population to consider what they do as worthwhile. So… clearly as a society we need to change this and do more to help care for our carers!
The theme “help build carer friendly communities” aims to help link carers with the information and support they need so that they can care for others, and look after themselves. Raising awareness of carers in the media, in work and in communities helps link carers to the available support, whilst making the rest of us aware of the amazing jobs they do!
For information on support and resources available for carers, click here.
Click here to read a touching carers week blog by Jill, an aspergillosis patient.
In order to make our research as strong as possible we want to involve any doctor in the US who is involved with the diagnosis and treatment of aspergillosis. Patients and carers can help us by passing on our details in an email to all of your doctors, including a link to a survey asking for their contact details. The more we get the better!
Please copy & paste the following to your clinical team – more than one if you have them, specialist or general doctor.
Dear [Your doctors name]
The National Aspergillosis Centre (NAC) in Manchester UK is one of the foremost research centres in the world studying all forms of chronic aspergillosis (e.g. CPA, ABPA, SAFS, Aspergillus bronchitis, aspergilloma) and was the first centre recognised by the European Confederation of Medical Mycology (ECMM) as a Centre of Excellence
Run by Director Professor David Denning, we would like to be able to contact clinicians in the US who are involved in diagnosing and treating aspergillosis, so that we can help involve you in our research programs. Only by working together can we improve diagnostics and antifungal medication for this chronic infection.
The Irish Lung Fibrosis Association has produced an hour-long video, which takes viewers through yoga exercises suitable for patients with lung fibrosis and other respiratory conditions. Exercise is key to a healthy lifestyle, and can improve quality of life in those who suffer from lung conditions. If you struggle to stand, the first half of the video is devoted to exercises that can be done sitting in a chair.
Further information about exercising with aspergillosis: